Adolescent Health Care Needs and Relationship to Disease in Patients With Childhood‐Onset Systemic Lupus Erythematosus

Abstract

ObjectiveTo characterize adolescent health and psychosocial issues in patients with childhood‐onset systemic lupus erythematosus (cSLE) and evaluate demographic/disease characteristics associated with adolescent health.MethodsWe retrospectively examined adolescents aged 12‐18 years with cSLE seen at Toronto SickKids Hospital, meeting ACR/SLICC classification criteria, assessed by Adolescent Medicine in cSLE clinic between 2018‐2020. Adolescent health issues were characterized using the HEADDSS framework (Home, Education/Employment, Activities, Diet/Drugs, Sexuality, Suicide/mood). Issues were classified as presenting and/or identified; adolescent health burden was tabulated as the number of distinct adolescent issues per patient. Multiple Poisson regression models examined associations between patient/disease characteristics (age, gender, material deprivation, disease activity, disease damage, and high‐dose glucocorticoid exposure) and adolescent health issues.Results108 of 181 (60%) adolescents with cSLE were seen by Adolescent Medicine, with a median of 2 (IQR 1,3) visits and a median of 2 adolescent health issues (IQR 1,5) during the study period. Common issues were mood (presenting in 21% vs. identified in 50%), sleep (27% vs. 2%), school/education (26% vs. 1%), and nonadherence (23% vs. 8%). Psychoeducation was provided by Adolescent Medicine to 54% of patients. High‐dose glucocorticoids (RR=1.82, 95% CI 1.41‐2.35, p<0.001), material deprivation (RR=1.17, 95% CI 1.04‐1.30, p=0.007) and lower SLEDAI‐2K scores (RR=0.95, 95% CI 0.92‐0.98, p=0.004) were associated with higher adolescent health burden.ConclusionAdolescents with cSLE experience many adolescent issues, especially low mood. High‐dose glucocorticoids and social marginalization are associated with greater adolescent health burden. This study highlights the importance of addressing adolescent health needs as part of routine care.